Re: a new anti epileptic drug/Carolyn

[Guest guest]

Carolyn,

I have to say that I am in agreement with . You have so much

going on at the moment and there seem to be so many different drugs

etc being used and ratio's changing and drugs going up and then down

that ael is probably all over the place at the moment - his

body is trying to cope with too many different things all at once.

Give yourself and him a break. If his father is not respecting the

diet then whatever hard work you put in will go out of the window

everytime he sees ael.

Just idle for a while and try and get ael stabilized as much as

you can. Gather yourself and your strength back up and then start

looking at where you can do the diet and get referred. When YOU feel

strong again you will be more able to fight ael's corner. At

the moment you are not sleeping, you are worried and you are trying

to cope with drugs, seizures, diet and a lack of support.

I am the last person on the world that will promote drugs over the

diet - but there comes a time when you need to STOP and just take

stock of things for a while and try and calm the situation down.

We all care about you and ael very much and I am sure that I am

not the only one that is VERY worried about YOU as well as ael.

You are no good to ael when YOU are burnt out.

I know you are worried and scared for your son. I know that you are

desperate to help him in whatever way you can and you will try

anything and everything to help him. We have all been there at one

stage or another but I really feel that you should not worry about

the diet at the moment and I feel that ael's body may have

enough going on at the moment just trying to deal with all the

different drug changes. Remember, he will also pick up on your

emotions and stresses.

I hope you don't think I have spoken out of turn here - I am really

sorry if you do. I just am very worried about you and we all feel

for you, we really do. Last week I had a taste of what you are going

through and I thought my world was coming to an end.

Take Care.

Love and Prayers

Emma. Mum to .

> Carolyn-

>

> Sometimes you just need to stop the seizures any way that is

possible. I would avoid the diet until you have proper support. Its

just allot of stress to learn the diet and do in on your own with no

help!! Can you go to a different center, one that is more

helpful...can you move? ( I know that's a big one, but I know you

love your son, and if the help isn't close maybe, just maybe you need

to think about relocating) lots of parents have done so, when the

support has not been there...Let us know how we can help.

>

> , mom to Ethan

>

>

> Carolyn-

>

>

> Below is what I found about the drug:

>

> Treatment with Sulthiame (Ospolot) in benign partial epilepsy of

childhood and related syndromes: an open clinical and EEG study.

>

> Engler F, Maeder-Ingvar M, Roulet E, Deonna T.

>

> Neuropediatric Unit, University Hospital, Lausanne, Switzerland.

>

> The effect of Sulthiame on the EEG and on clinical seizures was

evaluated in an open uncontrolled study in 25 children with focal

sharp waves on the EEG (FSW). 16 children had typical benign partial

epilepsy with rolandic spikes (BPERS), 5 children with atypical forms

and 4 children with no clinical seizures but cognitive disturbances

possibly related to the FSW. The effect of Sulthiame in suppressing

the EEG discharges was evaluated on the waking and sleep EEG before

introduction of the drug, and at 3 - 6 months, 6 to 12 months and

beyond while under therapy. The children were followed clinically for

one to several years. The EEG discharges disappeared or decreased

under Sulthiame in 13/21 cases at 3 to 6 months but reappeared in

3/13 cases beyond this period. No case had a worsening of the EEG or

of clinical seizures under Sulthiame, and no cognitive stagnation was

noted. Our data confirm the good tolerance and positive effects on

the EEG and justify systematic trials of this drug in the

partial " functional " epilepsies, especially when negative cognitive

consequences of the epileptic discharges are suspected.

>

> PMID: 12776234 [PubMed - indexed for MEDLINE]

>

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> a new anti epileptic drug

>

>

> Hi,

>

> The neuro told me about OSPOLOT, do you do this drug and did you

try it on your child?

> aël has so many t c seizures, I put 2 intra rectal valium

tonight but still 20 seizures!maybe a less intensive but I really

don't know!

> Nath's dad has him one day and he didn't respect the diet!I'm so

angry!

> I try again but I'm exhausted of seizures and every thing else!

>

> Carolyn, aël's mum

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